IBS Network
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From QPR to patient compliance and a bowel transplant!

Wednesday, 7 November 2012

It was never a sending off, I mean not even the home fans around me called for it and then there was the goal. Don't get me started on the goal. I mean not only was he offside once but actually twice - the referee is a w...........onderful guy the QPR fans chanted or something similar. As you could tell I went to football last weekend. After 3 years of no live matches I went to Arsenal to see them play the mighty QPR and yes you guessed it we lost.

we could clearly see offside from here :)

Still it was another tick on my list of things I have been able to do post bowel transplant. It was blooming cold though and it got me thinking about something that must have entered patients heads at some time or another.

By going to this match have I broken the code that talks about patient compliance? In this instance I can't imagine for one minute that I have but at what level do patients become not compliant in their care. Forget medical jargon for a minute and think about the practicalities. A friend recently told me of a fascinating statistic. Most patients are compliant for about a week and then they switch off. Think about it, most GPs prescribe antibiotics for about a week. Often over the counter medicines say take for a week and if symptoms persist then see a doctor so is compliance about the length of time a patient is engaged or is it actually about practical situations where a rule book cannot be written.

In the build up to a bowel transplant there is much talk about post transplant compliance. My team would judge whether I would take my drugs regularly and on time, whether I would adhere to the rigorous testing that has to happen and above all whether I would ensure that I alerted them to any issues that arose at the earliest possible time. They say that one of the key ways of preventing total rejection in a bowel transplant is to get on top of the problem at the very first opportunity. Overall I think that I am pretty compliant. I mean I listen to Justine when she asks me something (I don't always do it but I listen), I always listen to my kids if they want me to buy something for them (again I am fully compliant in listening, I just choose which bits to action) and I listen to what my doctors say. However at what level am I a fully compliant patient and is my level the same as the next patient? Is there a gold standard of patient compliance or is it on a case by case basis.

In the early post transplant days I would avoid crowds and try and steer clear of potential risks of catching an infection. My surgeon then allows me a few months later to go out, lead a relatively normal life but to be careful. So on a freezing cold afternoon, I wrapped up warm and went to football. Does that count as still being a compliant patient or am I now putting myself at risk of a cold that could lead to flu, a chest infection and so it goes on. No of course I should go I hear you shout (actually your silence is deafening).

Let's take that a little further. I have talked a lot about this wonderful dietitian who by the way now gets her official blog unveiling. Say hi to Marion O'Connor without doubt one of the leading bowel transplant, intestinal failure & IBD dietitians in this country - you can easily find her on Linked In. Marion keeps a very close eye on my nutritional levels and also kidney function. We chat every week and I see her every couple of weeks and more often than not my regime needs tweaking. At the moment I am at the stage of eating and drinking really well yet without the nutritional feeds on top I would lose weight as I cannot sustain myself on my own intake. So frustrating but don't get me ranting. Marion may ask me to add in a feed (which was the latest request) and ensure I put at least 1litre of fluid up per day but what happens if I do this all say 5 days out of 7 because I get fed up, frustrated or just wake up feeling lousy one morning. Am I then a non compliant patient. The reality is that I probably do everything she asks 5/6 days out of 7. At the moment though I still have plenty of moments when I just feel rubbish but what does that make me as a patient?

As anyone with a chronic long term illness will tell you your life has to involve medications, doctor visits and generally compromises in what you do and when. Those compromises may mean that one day you eat something that you know may upset your stomach or may contain more cholesterol than you should have but does that mean you are not a compliant patient. For me this is a fascinating topic. I am currently supporting a fabulous patient who is heading towards a bowel transplant. This person really tries to cope with everything yet I know they love a drink, perhaps even quite a few well post transplant they really will have to be careful. Binge drinking will be out but what if they go off the rails just once. Is that ok or is that deemed by the medics as potentially endangering all the work they have done and marks this person out as a non compliant patient.

I've rambled on but I really would love your views here on this topic.

Back in my own little bowel bubble it has been a little bit of a rough period. I am going in for minor surgery next week having developed quite a common hernia at the site of the stoma. The problems stem from where it is and the fact that they may not be able to close properly and I may need a mesh cover and some plastic surgery to sort it. All pretty minor in the grand scheme of things. Then there are the most embarrassing accidents. To me these really do get me down and I had 4 nights in a row when I was up three times a night dealing with the problems that accidents bring. I know it is down to the nerve endings and muscles not yet working but it is a flipping nuisance. So currently I go to bed with extra underwear and a towel - my wife must find me such a turn on, NOT! She really is so incredible with everything she puts up with, one truly amazing woman.

Away from my bowel and backside I have just had my first blog post commissioned for the Campaign for Better Hospital Food.http://www.sustainweb.org/hospitalfood/patients_view/ If you haven't supported this campaign then please click on and show us your support we really need it. You can also "Like" us on facebook at facebook.com/hospitalfood?f...

Till next time

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